Monday, March 5, 2018

Gradual Change

(I'm not looking forward to the sixteen days of liquid but at least ice cream counts as a liquid!)
                 Every few years I get an upper endoscopy. I have a condition called Achalasia (which basically means my esophagus does not swallow). My esophagus doesn’t work properly to get the food I eat down and my sphincter to my stomach doesn’t cooperate to let it in. My esophagus muscles are too weak and my sphincter muscle is too strong. It’s annoying but something I have learned to live with. I have to check on the condition of my esophagus every few years to check for cancer and other abnormalities that can come as a result of this issue. I had an endoscopy at the end of 2017, this time with a Botox injection to see if that would help relax the sphincter. Everything in my esophagus came back “normal,” but my Doctor’s exact words were, “Your esophagus looks terrible.” I wasn’t surprised. Years ago, back in 2008, I had a surgery called a Heller Myotomy to help let food get into my stomach. That surgery was incomplete, so it didn’t work. The surgeon didn’t quite cut far enough to help relax the sphincter. It’s not a simple procedure in terms of knowing how far to cut. If you cut too much, that is bad, and if you don’t cut enough, that is bad too. With the Heller Myotomy they cut through your side and abdominal muscles, to cut the sphincter. It is not a fun surgery. The recovery from that was long and pretty painful. Not something I would want to do again.
                In 2014, after moving to an area where there are actually doctor’s who specialize in this, I was told I would need another surgery. A new technology came out in a different country in 2008 (right about the time I had my Heller Myotomy) called POEM (per oral endoscopic myotomy). Instead of cutting through your side they go into your sphincter via the inside of the esophagus. Pretty amazing advancement. From what I hear, the surgery is less painful (3-4 days of pain) and only one night in the hospital (verse a few). However, with my past experience and not wanting to be a guinea pig since very few people had done the POEM procedure who also had a previous myotomy. I decided to wait. I was coping just fine. The surgeon I had consulted told me he really thought he could help me. He was surprised by how bad my swallowing was. During a barium swallow test the tech told me it was the worst barium swallow he had seen! They typically have you swallow and watch for a couple minutes but they had to have me do two different barium tests, one where they waited over 10 minutes to see if the stuff would go down, and it didn’t. I thanked the surgeon and went on my way. I decided to go the route of expanding our family, which 9 months later, included Eve. I figured I would take care of myself later. I was managing things just fine.
                Back to current times. After meeting with the head of gastroenterology at Swedish and then consulting with my thoracic surgeon who works with the gastroenterologist they both made it pretty clear I shouldn’t wait any more. They told me if I waited much longer I wouldn’t be a candidate for the POEM procedure and the next option would be to remove the last few inches of my esophagus. All the years of gradual change had stretched and ballooned out the lower part of my esophagus that the Doctors aren’t sure if the POEM procedure will fix that but they are optimistic (60-70% odds they gave me) that it will work. They are hoping my esophagus will shrink down some on its own if it doesn’t have to work so hard against the tight sphincter.
I knew my esophagus was stretched I just didn’t realize how bad it had gotten. That’s the tricky thing with gradual change. Maybe if I could go back in time and feel what it was like when I ate food 10 years ago it might be a no brainer that things have gotten way worse. But when it’s a gradual change, you adapt, and it easily becomes the new normal. This can be apparent in so many other avenues in life, not just with health. Spiritual health is one that comes to mind. New believers are often very passionate and on fire for the Lord, but as time goes on things can easily creep in that divert your attention away. Maybe you used to spend an hour a day in worship and prayer. Maybe you served more. And for whatever reason the time spent in prayer gradually got shorter. The days spent serving others became less. More life obligations crept in and became the new normal. Maybe you noticed at first. Maybe you told yourself it was just a season. But as time passed it wasn’t just a season, it was the new normal. A new normal your younger self wouldn’t recognize. The good news is just as you slipped out of your old normal you can work your way back in. It may be hard and even painful at times. It might feel unnatural at first and can even seem overwhelming to bring yourself back on the path from which you strayed. So, start small. You don’t have to change overnight. It took time to get where you are at and it will take time to get you where you want to be. Don’t go it alone. Surround yourself with others who may in your eyes, be where you want to be spiritually. And pray.  
I probably would not have gone the route of looking into surgical options again if I was not surrounded by people who encouraged me to seek treatment. People who knew what I was experiencing was not normal or even close to what my normal used to be. I just couldn’t see it. My husband saw it. The nights I am up in pain are becoming more frequent and longer lasting.  These “episodes” as I call them, start with minor pain, which usually leads to my being up all night, and ends with several bouts of vomiting. I originally thought it was heartburn but soon realized this was something different. The Doctors told me it is probably two things, food rotting in my esophagus which makes it inflamed, and my esophagus going into spasm. On the nights I have these episodes I am so miserable, usually for 24-48 hours. During these moments I pray to God to take the pain away and vow to go to a Doctor to see what can be done. Then the episode passes and I am back dealing with my “normal” achalasia and I again think I can manage this. Which is why I am glad I am not going through this alone. I have people to call me out on my stubbornness and encourage change. It’s funny how many things I was trying to let get in the way of doing this surgery, yet every time I tried, God seemed to keep directing me to where I am at now. Deep down, I don’t want the surgery, but I also know I really need to give it a try. As the date gets closer I am finding less and less excuses to try and get me out of it and am accepting the change I have in store. I have surrounded myself with experts in the field, I have a husband who will see me through this, and two awesome girls to remind me the reason I am putting myself through some pain and discomfort. I have faith that no matter the result I will no longer be sitting still, letting my esophagus choose my life path. At least I am taking back control. Yes, this is a subtle analogy to your spiritual journey as well. Surround yourself with those who know God’s word, have a support system, and have faith. So much can be accomplished if you bring it to God in prayer. You don’t know what the future holds. I can guarantee you it won’t be easy, but whichever path you choose, neither will be easy. That’s just life.
                After my endoscopy in November the Doctor prescribed me nitroglycerin (yes, the stuff they use to make dynamite). I was so afraid to take it due to the side effects I read about (mainly the nitro headache and chance of passing out). I was supposed to take it when the esophageal pain started. I had one night where I had an episode but I was too afraid to take it since Levi was on shift and I didn’t want to try it alone for the first time. A few weeks later I had another episode. I waited and waited and waited. Finally, around 4 am when I was about to start the vomiting that happens with my episodes, I woke Levi and told him I was taking the nitro. I had the pill sitting on my lap for over 20 minutes before I finally decided to take it. I took it. Then immediately sprinted to the bathroom and vomited. Apparently, it opened up my sphincter and everything came out. I think I had waited too long to take it, when my symptoms were already too severe, but the good news is I didn’t get a headache and I didn’t pass out. It was small but taking that nitro pill for me was a little leap of faith.
(Little device to measure my ph)
                Now I am at a point where surgery is not something to put aside. My youngest is almost 2.5 years old. I think I’ve waited far longer than I should to take care of this. I had one more endoscopy about a month ago where they did a Bravo study to measure the PH in my esophagus over 48 hours. This would determine whether or not I needed a fundoplication instead of just doing a straight POEM procedure. Basically, if you are opening up the sphincter, you are increasing your chance of having acid come back into the esophagus. If I was already having acid in my esophagus my surgeon would recommend to have the fundoplication at the same time. My results from my Bravo study showed that I had very minimal acid in my esophagus (.3% of the time I believe) and that included some puking due to the Versed and Fentanyl I was given to do the procedure. I don’t do well with opioids.
                Now I’m just waiting. My surgery is scheduled, it will happen this month. I have to be on a liquid diet for 2 days prior and 14 days after surgery. Sixteen days in a row of only consuming liquids. I’m not looking forward to the pain and the actual surgery but I think I’m looking forward to the diet after even less. If you have any great smoothie recipes, or liquid soups, I’m all ears. I know it is not a guarantee that this will fix my problem, and there are risks with the procedure, but sitting around and letting change gradually take me to a point of no return with my esophagus seems far worse. So, here’s to not sliding into a state of comfort and instead getting back to a new normal.

Wednesday, November 8, 2017

Everything and Nothing

It’s been a long time since my last blog post, I have two very cute reasons why that is the case. The past month felt exceptionally long for me. It was a period of time where I am living as “the hunter’s widow.” Basically, between hunting and work I think I saw Levi maybe four or five days from the beginning of October-November 8th. He had training, then shift work, followed by deer season, back on shift, back to hunt for deer, back on shift, elk season, etc.
(Levi hunting)
You get the idea. When I thought about doing a blog update with what’s going on, I stopped and thought, and really had no idea. I can’t remember anything these days. Everything is a fog. Nothing seems worth writing about, we just go through the same routine day in and out with outings here and there but as a stay at home mom nothing seems that exciting for people to read about. I mean at the end of the day, there’s this strange phenomenon where I’m exhausted and yet if I were to put down on paper what I “accomplished” for the day it looks like nothing. How is it I feel so busy throughout the day and yet it doesn’t seem like I get much done? The kitchen could still use some more cleaning, there are still little toys strewn about, I still have laundry to fold, and wash, and fold…when was the last time I cleaned the bathrooms? Washed the sheets? The list goes on and on.
                And here is a perfect example of why I am busy and tired at the end of the day when it looks like nothing happened. Today the girls ran into my room at 7:30am. Eve comes to my bed and asks to come up. I pick her up for a snuggle only to soon realize her diaper had a major pee leak over the night and she is soaked, and now I am damp. I take her and change her, then strip her bed and get to washing her mattress protector, as that will be needed for nap later. After starting the laundry, I make them oatmeal with blueberries and as an extra fun treat today, sprinkles! The girls are itching to do some painting after breakfast. I clean up the kitchen and happily set out some paper for them to “finger paint.” I say “finger paint” because it soon turned into so much more than that. It started on their fingers and for Lily became a whole-body painting experience. I tried to stop her early on but she was too quick and once she was a mess I figured a little more wouldn’t hurt so let her enjoy herself.  Eve followed suit with painting her feet but was relatively clean by comparison. When they finished it took somewhere between 30 minutes to an hour to get everything cleaned and the kids bathed. I went downstairs to continue cleaning the paint in the kitchen.

        The girls were playing together nicely upstairs while I finished cleaning. Eve took off her diaper, put her potty seat on the big toilet, and went pee. I went upstairs to help her wipe and reward her with two chocolate chips. Lily gets two as well for being a good cheerleader. Eve screams, “I want to be naked!” I figure she’s been doing a good job with going in the potty and since she just went she shouldn’t have any accidents. Then the laundry chimes and I head downstairs to switch it out. After switching the laundry, I head upstairs and go in Eve’s room to put some things away. Suddenly Eve comes running out of Lily’s room and stops and stares at me. I know that look. That is the look of a kid who had an accident. “Did you have an accident?” I ask. She looks at me and runs away to hide. I go into Lily’s room and gasp. She didn’t have a pee accident. She had a huge poop accident. I grab some toilet paper to pick up the huge logs and call Eve back to be wiped. Finally, I am able to convince her to come out of hiding and get wiped. I head downstairs for the carpet cleaner vacuum (boy has that been a useful purchase) and get to work. When that’s finished the kids are telling me they are starving. I tell them to play a little bit while I empty the vacuum.
                While downstairs, I go to the deep freeze, grab a frozen pizza, and start the oven. That’s going to be lunch. Which gave me 18 minutes to get this written. I just heard the oven beep. And that’s what’s been happening up until noon. So, it took over 4 hours of work to get the house looking like it did when we woke up. And that’s why at the end of the day everything and nothing has been accomplished.

Tuesday, June 6, 2017

The Crash That Keeps on Giving

(Fire Department at our door)

                I wanted to give an update on how Levi’s recovery is going after his mountain bike wreck a few weeks ago (see previous blogs here and here). Things were a bit rough the first two weeks with good days followed by really bad days. The first week he dealt with some paralysis of his digestive system probably due to the impact of the wreck and a little with the pain meds (though once he got home he really wasn’t taking anything heavier than Tylenol). Once things got moving there he started having severe headaches. It was about 6 days post wreck on a Friday, when he had his first. He was lying in bed in extreme pain. He felt sick. He couldn’t eat. He couldn’t have even the slightest amount of light or noise. He was in a lot of pain. The next few days the headache subsided though it was still there, just not as severe. Then on Wednesday we decided to venture out to Snoqualmie Falls as we thought a short easy walk would be fine. His pain was getting better every day. After the Falls, we stopped at a park and let the kids play. When we got home another extreme headache hit. That’s when I began googling and got a little worried. I know you should never “google” symptoms as you’ll get the worst-case scenario.

                After reading that people can have slight brain bleeds after injuries that don’t show up for about a week I called my sister who is a nurse for her advice. She thought he may have had a minor concussion from the wreck, or there could be a hematoma pressing in his brain, or unlikely but still a small chance of a brain bleed. I mean if he hit hard enough to lacerate his kidney, his head could’ve been injured as well even though he didn’t hit it hard. She thought it would be best to get him checked out since his head was never checked in the ER as he wasn’t showing any signs then of a head injury. I called Levi’s coworker, Jason, who was biking with him and spent time at the hospital after the wreck to see if they ever checked his head for injury. I told Jason Levi’s symptoms and being a trained first responder he also thought we should take him in to be seen. He said it was probably nothing but with his symptoms there was a small chance it could be something serious and he didn’t think we should mess around so long as there was a chance. It’s an understatement to say Levi was not thrilled with the idea of going in to the ER. He wanted to wait until morning but with this headache he was clutching his head in pain and was not looking good. Behind the scenes, Jason called a captain with the Puget Sound Fire Authority at the station near our house and told him the situation. I also called the number on Levi’s discharge instructions for Harborview to talk to the nurse there. I was waiting to get a call back and was relaying information back and forth to Jason. Jason told me to call 911 so the crew could be dispatched. He also talked to Levi several times to make sure he would go in, even joking (though I don’t think he was joking) that he knew all the right things to say to get him “invol’d” (involuntarily brought in which involves police and soft restraints). Levi obliged.
I got a call back from the nurse’s line at the same time as I heard a knock on my door. I opened the door and saw the fire department. Now that’s the quickest response time ever! I technically hadn’t called yet. While I was on the phone the Captain told me to hang up so I could call 911 and dispatch them. Then when he heard I was on the phone with Harborview he told me to stay on the line with them so I could see where they wanted us to take Levi and they would dispatch themselves. The nurse told me that they typically want to see you back at the hospital you were treated at, however, they also recommend going to the closest hospital. Harborview is great for traumatic injuries but in this case the closest hospital seemed like the quicker and more appropriate response so the Fire Fighters decided to take him to Valley. They called their Aid car to transport him and asked him when he wanted to go. He said he wanted to try to eat something as he knew he wouldn’t be getting any food at the hospital. He ate a few bites of food that had been so graciously made for us through a meal train started by people at Faith church in Kent. He got into the Aid car and they took him to the hospital.
Jason called and told me he was going to the hospital to stay with Levi and drive him home afterwords. Eve was sleeping and Lily was supposed to be in bed, though the excitement of having the Fire Department at her house was keeping her awake. She talks about how fun it was to have them over at our house. I’m hoping we don’t have to have them over here anymore. No more emergency visits. We can visit them at the station. We watched as the trucks drove away then went inside to wait. About midnight Jason called to tell me they did a CT scan and everything came back fine. He was having bad migraines. We aren’t sure why he started getting them but so far, he’s been migraine free for 11 days.
During this time, he also had a hard sneeze one day and felt immediate pain in his lower abdomen and a bulge. He immediately thought he had a hernia. He has had two inguinal hernias so knew what it felt like. Since he was off work for his kidney recovery he wanted to get this checked out as soon as possible so he wouldn’t have to take more time off work. He opted to go to an urgent care center since his Doctor couldn’t see him for a few weeks. At the urgent care, they diagnosed him with a hernia then scheduled him for an ultrasound a couple days later. The radiologist called after the ultra sound to say he didn’t have a hernia. It didn’t show up via imaging. Now he was in a predicament. Should he wait and see if things resolved? Was it a pulled muscle and not a hernia? What if he waited and it was a hernia and he just delayed his recovery? He decided to set up an appointment with the surgeon who did my hernia repair 5 weeks earlier for a second opinion.
After seeing him, the surgeon confirmed he had a hernia and said that sometimes, especially if it’s early on, they don’t always show up on imaging. When he was laying down for imaging Levi felt like it went back in and that he didn’t bear down hard enough to make it bulge. The technician told him he was bearing down plenty hard so he assumed it was showing up on the imaging. He is now scheduled for hernia surgery tomorrow (June 7th). Hopefully this will be the last surprise we get related to his crash that keeps on giving.